I believe we all have an innate desire to feel connected with one another. It doesn’t matter whether that connection is when we’re empathizing with another patient plagued by the same disease, or when the anguish we experience matches that of a patient who is also a friend. One of…
Living With IPF — Charlene Marshall
Charlene Marshall is a fiercely independent 30-something-year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Exercise is important for people with chronic illness. But as someone living with idiopathic pulmonary fibrosis (IPF), a disease characterized by progressive scarring of the lungs and difficulty breathing, I know working out is easier said than done. I’ve also found some strategies that make it easier for me.
As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…
When thinking of chronic lung conditions, you may visualize the use of supplemental oxygen or a person struggling with physically demanding tasks, such as walking up a flight of stairs. People living with idiopathic pulmonary fibrosis (IPF) often struggle with daily tasks. As our disease progresses, our ability to exchange oxygen…
Idiopathic pulmonary fibrosis (IPF) is a cruel disease. Characterized by progressive scarring in the lungs that prevents oxygenation, IPF slowly steals a patient’s ability to breathe. There is no cure for IPF, and the only approved medications to slow the development of lung fibrosis are Ofev (nintedanib) and Esbriet…
Have you ever had to persuade yourself to do something? I often negotiate with myself to complete tasks I don’t want to do by rewarding myself with something enjoyable afterward. That worked when I was in school and cramming for exams: If I just get through this last chapter, I…
Most of the conversations in the Pulmonary Fibrosis News Forums are about the physical and medical aspects of living with idiopathic pulmonary fibrosis (IPF). But occasionally we steer off-topic and talk about who we are as people first and patients second. We talk about our families, travel plans,…
A roadblock to your future could be any number of things. Perhaps it is a new skill necessary to advance your career or the finances needed for a big purchase. Those are normal hurdles that many have to overcome to achieve their goals. A life-threatening lung disease is an abnormal…
As I sit down to write this column, I am having a difficult day. Following a recent column about vulnerability, I heard from many readers who said my words encouraged them to express their own vulnerabilities. As a result of that feedback, I want to share that today I…
An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…
You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless. PF affects much more than the ability to breathe — it also…
One of my most vivid memories of my late friend Serena Lawrence is when we sat down to discuss my becoming a columnist for Bionews Services. I’d just been diagnosed with idiopathic pulmonary fibrosis (IPF), a lung disease characterized by fibrosis in the lungs that prevents oxygenation. Serena wrote…
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